Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends.
Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.

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Tuesday, 19 April 2011

Soul on my Skin #TBofBTT #TBofB

“Our tattoos are us wearing our souls on the outside”. So said a Maori chief at the Wellcome Collection’s ‘Skin’ exhibition last year. I was there because I had been immortalised in an etched portrait by the wonderful artist Gemma Anderson, in a piece we entitled ‘Against Nature’. As the chief said this, my dad leant forward and said “like yours are for you”. And it was true. Despite the fact that my desire for tattoos was a source of conflict between me and my parents for some years, they now understand why I not just wanted, but needed, to have them.

I have scars of all different types and shapes and shades across my body, caused directly by EB or by the treatments and surgery it has lead me to undertake. Some are hidden by my dressings and clothes, so are completely visible, not least on my hands, neck and on my left eye. I don’t hate them, they are what they are. Battle scars, I suppose, from a war with my own body. For me, tattoos represented a chance for me to have “scars”, permanent marks on my body that I had chosen to have there. The marks I already have are a testament to the weakness of my skin, the defects in my genes and collagen. They show what is outside of me. Tattoos would reflect my strength, physically and spiritually, and the beliefs and ideas that have given me the positive energy to keep going. That sounds incredibly cheesy, I know. But it’s true, nonetheless.

So my parents escorted me to the tattoo studio, where the artist, Pete, and I made an accord in three parts: 1 – one of my parents had to be with me, as the tattoo would be on my back and he needed someone with experience to watch for impending damage. 2 – If damage occurred, I wouldn’t protest at him stopping immediately. 3 – If it didn’t work, I wouldn’t go elsewhere and try again.

Tattoo 1 – Two small stars on the left side of my lower back. Though the sound of the machine initially made me want to do a runner, the adrenaline rush of having the needle buzz against my skin was immense. To anyone but other than me, those stars are completely unremarkable, but to me, they mean so much – mastering my fear of pain, proving that I know my body better than anyone else, vindication for standing by my beliefs, and a step toward having some control over what my body looks like. Not only was there no damage to my skin, the tattoo healed better than on someone without EB. No weeping or scabbing, it looked as if it had been drawn on in pen. No one has any idea why, but my back has always behaved differently to the everywhere else on my body.

Though I didn’t, as my mum feared, contract blood poisoning, but I did catch the Tattoo Bug. The two minute experience of the stars wasn’t enough – I wanted more.

Tattoo 2 – “I believe that whatever doesn’t kill you, simply makes you…stranger”. Yes, it’s a quote from The Dark Knight, uttered by The Joker. It speaks to me because the more I experience with EB, the more warped my sense of humour becomes. The quote and the speaker fitted perfectly, and it’s a reminder to me to only let darkness into my comedy, not my heart or soul.

Tattoo 3 – “Now I know that freedom must be taken, and fate stolen ~ Anno”. This comes from an untitled poem by Anno Birkin, someone I will write more about, as he deserves a post all of his own. It’s part of a longer excerpt, the rest of which I have on a pendant. I had this tattoo after a long spell in hospital, losing a friend, and having another battling cancer. I was realising, more than ever, that life is short and you have to reach out and grab what you want from it. Nothing worth having is easy to get. I haven’t achieved as much I’d like, but carrying this on me, always, reminds me to never stop trying.

Tattoo 4 – “Bettina. Some Fantastic Place”. Betti is the above mentioned friend, who battled cancer. She passed away in December 2009, and I’ve never known grief like it. I knew that, wherever she was, Betti would be telling me to stop crying and carrying on and enjoy life. ‘Some Fantastic Place’ is a song by one of my favourite bands, Squeeze, and as it was written about their friend who was taken by leukaemia, it seemed to call to me. Bettina was the bravest person I’ve ever known, and I feel honoured to have had her in my life, and to still have her in my heart. Betti having her tattoos gave me the courage to have mine, and that felt like the best memorial I could give my amazing friend. It’s completed with a little butterfly, flitting away from the words. Not to symbolise EB, but to show the free spirit that Bettina was, is and forever will be.

My next tattoo is imminent, and no doubt I’ll write about that, too. My tattoos have given me things to love about my body, marks I can look at with pride and happiness. One the rare occasions I disrobe in front of people now, no one comments on my EB scars, instead asking about or admiring my ink. They give me the freedom to be me, and I’m eternally grateful to Pete for being brave enough to take the needle to me in the first place.

4 comments:

I have a full back tat for exactly these reasons. Trial by fire which I get for myself, not anyone else. It still needs to be finished but I've been having some rubbish skin reactions so I'm not sure I dare to get it finished. I'm glad I got mine when I could.

I have big gaps between mine, as I usually have infections. But they are always worth the wait. It makes me laugh that, having actually argued with me, so adamant was my dad that I was not having tattoos, last week he reminded me that I need to book my fifth!

Please excuse the typos in my post - I obviously wasn't as awake as I thought I was! X

I identified with it very much. When I had my first surgery (abdo) I got my belly button pierced and went to get a tattoo around it.

It was MY belly and I wanted to claim it back. I wanted a marker there for future surgeons - "I'm a person not just a condition" I wanted my personality to sit on top of my rotten diseased piece-of-crap bowel.

Hi Melissa, I smiled at the bit in your blog, stating that your tats are something of yourself that you can look at with pride and happiness - before I knew what EB is. I've just looked it up on Wiki. Now I smile at your strength and determination, to take control of your skin in a similar way to how it dictates to you - as and when it's time, it'll be marked. It's obviously good for you to have that outlet, you and Pete creating something beautiful that serves as a permanent reminder of your spirit's resilience and to honour people who have touched your life. Your tattoos have liberated you, they're marked right there in defiance next to your scars. Thank you for sharing that - it's led me to understand a little bit about a condition that I was previously unaware of. Awareness can only be a good thing right! Very best wishes to you Melissa x